Jennifer Brea had her whole life ahead of her when she was struck down with a fever and flu aged 28. She was a PHD student studying political economy and statistics at the esteemed Harvard University in Boston; she had just got engaged to her partner Omar; and she was a keen traveller who had spent lengths of time carrying out research in China and eastern Africa. “I felt like everything was falling into place, like my adult life was about to start,” Jennifer recalled.

But then she got ill – and she never recovered.

Unfamiliar symptoms

Eventually the symptoms subsided, but over the following year she got sick over and over again – something that was extremely abnormal. “I was ill about 7 times that first year. Usually I’d have a sore throat or a cold or something once a year,” she said. Each time the illness passed, Jennifer would experience what she now calls ‘crashing’ – the same neurological symptoms she got the first time, along with a fatigue so heavy she was unable to leave the house, or sometimes even her bed.

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“I could still function in most ways”, Jennifer said, although she did note some changes to her previous stamina. “If I tried to ride my bike the normal 12 mile ride along the river, I would make it to mile 6 and would have to call a taxi to take me home.” Not realising something more sinister was going on inside her body, Jennifer simply put it down to getting older. “I told myself maybe this is just what happens to you when you’re in your late twenties,” she said.

But then Jennifer’s symptoms started to intensify. “I started to have episodes of astasia [the inability to stand up unassisted] and I would lose the ability to speak and have trouble writing the alphabet.”

All in her head?

Curious to work out what was going on, she went to various different doctors, telling them over and over that she believed something was wrong with her immune system. “Doctors told me that wasn’t possible,” she recalled. And there was a reason they were so dismissive; all Jennifer’s test results were coming back completely normal.

As you can imagine, it was an extremely frustrating time. “I was experiencing symptoms I couldn’t even name, that I had never experienced in my life, but when you go to the doctor and they tell you nothing’s wrong, it’s hard to know how to respond to that. They’re the expert,” Jennifer said.

“All Jennifer’s test results were coming back completely normal”

The general consensus from medical practitioners was any one of three things: “One, that you’re not actually sick even though you feel like crap,” explained Jennifer. “They weren’t saying it was in my head as such, but they were saying what I was feeling didn’t match what they were measuring - and they believed what they were measuring was right.

“Other doctors thought I was just stressed. I was studying at the time so it was like, ‘oh you must be stressed over final exams’,” said Jennifer. But she insisted that wasn’t the case. “I told them no, I’m a graduate student – I teach students – I’m not in exams.”

Jennifer and her husband Omar

Jason Frank Rothenberg

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There were also suggestions that Jennifer may have been depressed – “you see someone lying in bed all day in a dark room and that could be because you’re depressed, or it could be because you literally can’t lift your head and you could be sensitive to light,” she said – but she knew that wasn’t it either.

Hysteria

Eventually, Jennifer was diagnosed by a neurologist with ‘conversion disorder’ – a modern-day name for hysteria. The concept was coined in the 19th Century as a means of diagnosing women with conditions medical experts couldn’t understand. The theory was that a patient of hysteria – or of conversion disorder, as it’s now termed – had suffered some kind of trauma in their childhood which they could no longer remember, and that years later it manifests itself physically.

Sounds a bit far-fetched? That’s because… it kind of is. “It didn’t make any sense to me. I thought, ‘is this truly caused by some trauma that I can’t remember, and that you can’t prove existed because you don’t know what it was?’” Jennifer said.

“I was waking up each morning disappointed to still be alive”

However hard she found it to believe, Jennifer didn’t want to outright reject the hypothesis. It was all she really had, so she decided to test whether or not it was true. She resolved to take note of every pain and symptom in an attempt to establish some kind of pattern so she could work out whether it really was to do with her mind. “I walked home that day and really ignored what I was feeling because the doctor had told me that it had no biological cause,” she recalled. “And as soon as I walked through the door, I collapsed on the floor. I developed the worst fever of my life and was in bed for the next four months. That was the last time I ever walked that far.”

For four long months, Jennifer - still not yet 30 years old - was confined to her bed, sometimes barely even able to get up to go to the toilet. “The hardest part was waking up every single day in the same room, over and over and over again, never knowing if I was going to be able to leave my bedroom again. I was waking up each morning disappointed to still be alive,” she confessed.

“I was so weak I’d often have a hard time just lifting my head. I had stabbing pains in my heart and my brain, and I was often so stiff that I couldn’t even touch my chin to my chest. I became sensitive to almost every food, and when I would just stand up my heart rate would go up to 140 beats per minute. It was as though I was running a marathon even though I was standing still.”

Jason Frank Rothenberg

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It was a dark time, but throughout it all, Jennifer’s fiancé Omar remained supportive. “I told [him], ‘You don’t need to do this, this is not what you signed up for’. But he just said to me again and again, ‘I wouldn’t be anywhere else. There’s not a different life or a better life, this is what I want’.”

A diagnosis at last

When the official diagnosis came, about a year after Jennifer’s first fever caused her to crash, she recalls it feeling somewhat anticlimactic. Jennifer has Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis, which is more commonly known as M.E. It’s a condition for which sufferers have historically been ridiculed - accused of simply being “lazy” - due to the lack of scientific research or understanding. And here’s the other thing: it doesn’t have a cure.

“It was a relief to finally have a diagnosis,” said Jennifer. “But I also understood that there was no real treatment. There was no plan for how I got better.”

"I'm like a broken battery that only ever charges to 10%"

Scientific research into the causes of M.E. has advanced significantly over the past few years; experts believe the problems arise due to sufferers’ lack of ability to generate energy from their food intake in comparison to the rest of us. Jennifer compares it to a faulty battery. “It’s like being a broken battery that only ever charges to 10%. When you have that 10%, within those bounds you can function, but once you exceed it you just sort of turn off, and you crash,” she explained.

But while science is getting there, medicine hasn’t caught up - which means doctors are still unable to test and therefore diagnose correctly. The problem is, early diagnosis could actually prevent cases of M.E. from becoming as severe as Jennifer’s, so for the sake of future patients, it’s imperative that medicine does catch up.

Almost six years after her diagnosis, Jennifer is still largely wheelchair-bound, but she knows better now how to manage her debilitating condition. She takes a range of anti-viral medicines and keeps a close eye on her heart-rate so she doesn’t over-exert herself and then crash.

Jason Frank Rothenberg

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While Jennifer’s life is completely different to how she imagined it, she’s doing everything she can to give her as much normality as she can. Possibly the biggest change has been in her career. “I was someone who derived my identity from my ability to read and write and think,” Jennifer said. She had half-written books and – although she was training to become a professor - hoped one day to become a writer.

“Suddenly I’m lying in a bed all day and I can’t read or write or think,” said Jennifer. “So I spent all day just watching Netflix and looking at Pinterest. The only things I could do were visual”. And that’s where she got the idea to make a film about her illness.

Exposing herself

Jennifer’s film, Unrest, details her own experience of the bleak symptoms M.E. has brought, as well as investigating how it has affected others. And it’s important for so many reasons.

“The disease is so hard to understand because it's so hidden, because it's so variable, because you can be totally fine one moment and then crash and be in bed the next,” explained Jennifer. “25% of patients are homebound or bedridden and so whether it’s our doctors or our own families, they never see us when we’re at our worst. I really wanted to be able to bring people into our bedrooms, inside this experience, in an intimate way.

"With the belief that if people could really see what was happening, it would begin to change everything. It would unravel the stigma, it would help doctors understand better how to diagnose patients, and it would be an invitation to new scientists to get interested and research the disease with the hope of finding new mechanisms and new targets for drugs.”

Making the film did a lot for Jennifer personally, too. “It really is what saved my life. When I first got sick I spent a lot of time just wondering what value or purpose my life even had. But this gave me a tool of expression, as well as being a way to connect to other patients so I didn’t feel so isolated,” she explained.

“I had seen a lot of people take their lives and I did think it could have ended like that for me, too.”

With the help of her most recent combination of medication and the new-found resilience it's brought her health, this year Jennifer even managed to get back one of the things she loved most about her life before being struck down with M.E.: travelling. She visited to Copenhagen for the film’s European premiere, and went to Sheffield for its UK premiere.

“I’m not going to be running up mountains any time soon,” said Jennifer, “but I have been able to get back some of the life that I had before.”

Unrest is released in selected UK cinemas on 20 October 2017, including a Q&A tour with the director Jennifer Brea.

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